MEA initial reaction to latest PACE Trial results on recovery | 31 January 2013

January 31, 2013

Initial reaction from Dr Charles Shepherd, Medical Adviser, The ME Association:

It is really quite bizarre to find that there is absolutely no data whatsoever in this paper on what most people would regard as three objective markers of recovery:

1 a return (or ability to return) to full time meaningful employment or education

2 no longer claiming any DWP sickness or disability benefits

3 an estimation of how far someone can walk

Just as surprising is the absence of any discussion on the use of benefits as a marker of recovery along with the very unsatisfactory reasoning given in the paper (on page 6) for not using employment status or an objective measure of activity levels:

The main limitation of this analysis is the absence of a generally agreed measure of recovery. We addressed this by using multiple domains of health and disability. The domains chosen and the criteria for recovery on each were defined before we undertook the analysis. Alternative domains could have been used, such as return to work or objective measures of physical activity. Return to work is not, however, an appropriate measure of recovery if the participant was not working before their illness and is influenced by other factors such as the job market. Objective measures of physical activity have been found previously to correlate poorly with self-reported outcomes (Wiborg et al. 2010), which may be related to the finding that activity patterns in CFS patients are heterogeneous, with only a minority being pervasively passive (van der Werf et al 2001).

16 thoughts on “MEA initial reaction to latest PACE Trial results on recovery | 31 January 2013”

  1. Recovery is defined as being well. It doesn’t hold true that people don’t work when sick, no longer claim sickness or disability benefits, or are able to walk further then a set distance. Recovery means being well. This normal use of the term recovery means that no one in the PACE trial recovered.

    1. The 6-minute walk test which was used in the PACE trial as a secondary measure showed no objective benefit from CBT, and GET only produced a further 45 m. These cannot be regarded as treatments.

      1. I agree the results were poor like you mentioned. My point was that a threshold like 500 metres on the 6 minute walking test could have been used as part of a recovery definition.

        1. Distance walked wouldn’t be a measure that could determine if a person was well again, only the distance they could now walk, which may depend on several factors, not just the speculative treatment under review.

          1. That may be so. But they don’t have data from actometers at the end, while they do have the 6 minute walking test results. Reaching a certain threshold in six minutes could give an idea of who might qualifty (i.e. an upper bound for the recovery rate)

  2. I attended what I now recognise as a CBT course at the John Radcliffe when I originally fell ill at the end of the 90s, there was a significant disparity in what I considered a successful result (getting back to work) and theirs (managing the symptoms.

    It wasn’t successful and attending weekly a hospital nearly an hours drive (I wasn’t driving) away made my condition significantly worse, they couldn’t even understand why the walk from the car park to the out-patients was nearly killing me.

    1. I have attended two CFS CBT courses and was considered to have “responded very well” despite the fact that there was no improvement whatsoever to my physical condition. The positive result was taken by the clinic to be an improvement in my symptom management.

      I should imagine a course in CBT would elicit similar improvement in symptom management of any chronic health condition. It may have its place but it cannot be hailed as an effective ‘treatment’. The results of this trial are clearly dressed up nonsense.

  3. Dr Shepherd makes very excellent and pivotal points.
    Does the publication “Psychological Medicine” offer doctors and academics the option of a reply to the paper, or at least further debate or discussion, or even a letters page?
    If so, I think the above would qualify admirably.

  4. The abstract concludes with the phrase:

    “The relatively small proportion of recovered patients may reflect the heterogeneity of CFS.”

    meaning – The relatively small proportion of recovered patients may be due to the fact that they most likely all have a different illness.

    One wonders, then, why the authors continue to champion their ‘one size fits all’ cure-all?

  5. The authors of this PACE trial study are using a deceptive trick to get their apparently good results.

    These researchers concluded in the abstract of their PACE study that:

    This study confirms that recovery from CFS is possible, and that CBT and GET are the therapies most likely to lead to recovery.”

    However, these authors are distorting the truth by using trickery of language centered on the word “recovery.”

    Their deceptive trick is this: these authors redefine the meaning of the word “recovery” within body of the text of their study, so that, under this new meaning of the term “recovery,” many ME/CFS can be said to be, ahem, “recovered” following the GET/CBT therapies used in the PACE trial.

    However, if you only read the study’s abstract, there is no indication that the word “recovery” used therein has been totally redefined by the authors, and thus the causal reader will erroneously assume that the word “recovery” just carries its normal English meaning, which in the dictionary is defined as “a return to a normal state of health, mind, or strength.”

    Thus many people causally reading this PACE study authored by White, Goldsmith, Johnson, Chalder and Sharpe will be led to erroneously believe that GET/CBT therapies can return a ME/CFS to a normal state of health, which is not the case at all.

    I think this deceptive trick used by the authors is a genuine case scientific misconduct.

    If you are going to redefine your terms and the words you use, you need to make sure that the precise definitions of these terms are clearly given, so that there can be no misinterpretations.

    It seems apparent that the authors of this PACE study actually want their completely redefined word “recovery” to be misinterpreted. Thus, this is not a mistake by the PACE study authors, but is deliberately deceptive.

    This deceptive PACE study publication should be reported to an appropriate body within the UK National Health Service (NHS), otherwise busy NHS doctors, who only have time to scan study abstracts, may read this PACE study abstract, and then get the completely incorrect impression that the GET/CBT therapies used in the PACE trial can actually cure ME/CFS, which they cannot at all.

  6. I agree – it does seem intentionally designed to deceive and mislead, and as you say, Hip, the casual reader – and doctors are very busy, time-pressed people- will assume “recovery” to mean “get better”, ie well. Look how it’s reported in Netdoctor:

    If this is “science”, well the moon is made of green cheese. Just imagine if cancer sufferers were never given chemotherapy or radiotherapy, but just CBT to address their “beliefs” about the illness. Would they be deemed to have recovered, even when they died, because prior to their deaths they had achieved a more positive mental attitude?!!

  7. Michael Sharpe is a medic, not a scientist. I don’t know who the other author is but I’ll bet its another medic.

    I really wish folk would stop referring to medics as scientists!

    There is a world of difference in their education and training and in how they think.

  8. “There are three kinds of lies: lies, damned lies, and statistics”, Benjamin Disraeli.

    White et. al., have worked verry hard to uprate there outcomes of ‘recovery’.

    1. The population is not representatieve because the patiënts were able to travel to therapists (much patiënts can’t),

    2. Changing protocol after research is scientifcly not done,

    3. White e.a. suits are standard for recovered CFS patients in the following objective way:” The mean (SD) scores for a demographically representative English adult population were 86.3 (22.5) for males and 81.8 (25.7) for females (Bowling et al 1999) . We derived a mean (SD) score of 84 (24) for the whole sample, giving a normal range of 60 or above for physical functioning”.

    White e.a. use a score according to their representative of the general population (60) but without a breakdown and sufficient to take into account age, which varies in proportion and decreases significantly with age according to table 3 (Bowling et al 1999)

    The minimum score or above for normal physical functioning according table 3 presented data (Bowling et al 1999) compared with the norm of White e.a. but now taking statistically correct age into account gave us the following results: (16-24) score: 83.4 (25-34) score: 81 (35-44) score: 79.9 (45-54) score: 66.3 (55-64) score: 51.7

    ‘’The average age of the participants in the study of White et al, 38, 77% of them were female and 93% were of white ethnicity’’. The average age of CFS patients is 38. You can see in table 3 that the studied group of CFS patients have a mean age of 38 and falls in category age (35-44 years) tabel3. The minimum score or above for normal physical functioning for this group (35-44) is a score of 79.9. This is much higher then the score 60 stated by white e.a.

    In summary: You can see that the average score in the rise of the age significantly decreases. A certain group of age may thus greatly affect the outcome. According to White et al 2013, 22% of CFS patients after following cognitive behavioral therapy restored. These researchers use a minimum score or above 60 physical functioning Rand-36 in general 84 (24). This data was not broken down into different groups of age. The average age in the study by White e.a. was 38 years. This requires a minimum score or above 79.9 for physical functioning according to the presented dat table 3 (Bowling et al 1999). The norm of recovery need to be adjusted for each group by age. The percentage of CFS patients (22%) that meets the standard definition of recovery state to discussion.

    White e.a. would have to make a breakdown into different age groups and adjust the standard recovery norm for these groups by presenting the data.

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